Thursday, December 31, 2009

So Monday the 21st when I walked into a dentists office, I knew the news would be bad but I needed the pano to prove my thoughts. I got it and this journey started again. I am older now, not 17. I am more worried now, because of the info that is out there now that wasn't out there then. I had a simpler surgery the last time. This time its much more extensive.

I was prescribed pain meds and they make me soo dizzy. Its funny I still hurt but I am soo dizzy. The effect my brain and eyes but not my pain. The pain is beginning to get so out of control that it is not only the left side of the jaw is hurting where the Amelo is but the right is hurting now too. If I hold my mouth open about two inches it stops hurting. I am worried that its going to be most of my jaw they remove if not all of it. From the scans I have seens it will be 2/3rds of my jaw that will be gone. I know when this is over I will probably not have any teeth left on the bottom.

It has reccured, this stupid amelo is back. I read and see people with Amelo getting implant teeth and its lovely I am sure, but I will never get them for two reasons: one they are entirely to expensive and I am uninsured(but most insurance companys won't pay for them anyway because you can get dentures implants are what they call 'vanity") and two because this has came back once for me, who says I won't go through this again in ten years. I have had a RECCURANCE, a relapse. I hope by not doing curettage this time and acutally resecting the jaw it will never return but we don't know, no one knows until it happens. MINE took almost TEN years to return.....TEN!!!

It scares me. I am scared that because I am completely uninsured I am scared that I will end up looking like a monster for the rest of my life. I know its a stupid worry at a time like this for most but I have been here before and done it before. I got rid of it and it came back. I am worried about how I may look because I am 26 years old, I am single and have been for three years and really its been longer because I only had a part-time guy then. I don't want to be alone for the rest of my life!! I always thought I would be someones wife and someones mommy by this point in my life and all I have are two cats. This is so not a pity party its just my inner thoughts!!

Tuesday, December 29, 2009

So today I had a CT scan with contrast dye. I went in there and the radiologist told me that I will feel a burning in my face and neck and then get the feeling that I pee'd my pants(even thought I had not). I was prepared. I was terrified of the needle but it was fast and I took it. I know there is going to be MANY more needle sticks to come!! He injected the dye and started the scan. I got the hot feeling and the pee my pants feeling but then I started feeling my chest get tight, my face(especially my lips) go numb and then I got extremely dizzy. I was loopy for about a half hour after. He told me to make sure I tell a radiologist if I ever have to have another one. Now, I am just waiting for my surgical resident to call me and let me know the date and time for my surgery. I don't want to lose my jaw next week but if I want to be able to go to school in Jan. I need it to be next week. Good by jaw, Hello PAIN!!

Well my back story with my Ameloblastoma. When I was 17 years old(2001), I was a happy senior in hight school, at the time I thought of nothing more than FINALLY getting the braces off my teeth that had been there for 5 years. After the removal I went in for a routine cleaning...thats when my life changed. She noticed something very odd in my mouth and decided to take a pano for it, when the pano came back it wasn't good news. There was a very large black mass in my left mandible. We had no idea at the time as to what it was and christmas was only a few weeks away. I was scheduled for a biopsy only a few days later. After that biopsy things began to move quickly. I was refered to an oral surgeon, who was located about an hour and a half from where I lived. The oral surgeon had requested all panos on file at my previous dentists. When he recieved them he was shocked to find what he did. On the xray taken prior to me getting braces there was a tiny black dot, the beginning of my Ameloblastoma. My mother had asked my dentist numerous times what that dot was and numerous times he said its nothing at all. The oral surgeon was horrified that any dentist would ignore that dot and a mothers pleas for answers. So 5 years later here I am with a giant Ameloblastoma growing. They wanted to do surgery immeditaly but I refused. I said that it was my senior year of high school and I wasn't about to miss out on everything. The oral surgeon (having a daughter my age) agreed to wait till after I graduated 5 months later. I had a curettage done, where they scrap out the infected bone and tumor, lost 5 teeth(all the way up to the K9 tooth). I then had an illiac crest graft(hip graft) to replace what had been removed(which was most the bone). I was in a lot of pain for a while, not because of my jaw but my hip. I still have horrible pain because of my hip and will tell anyone that may have to have a hip graft to tell their doctors to use another method(there are many out there). I went back for 3 years for regular check ups and xrays, everything was always perfect and healing nicely. I unfortunatly became to old to remain on my parents insurance and was dropped. I stopped going after that. I couldn't afford $300 in doctor visits. In, 2006, I was having trouble with my lower teeth on the left side(near my Amelo area). I had no insurance still and when to the Indiana University School of Dentistry to get it checked out. After hearing my story they did a pano and everything was perfect; the bone looked great and solid. The pain was just from some tender nerve endings, probably due to the surgery. However, things took a turn for the worst this year. In February I was laid off from my job as well as 3000 fellow employees. In July, because of the lay off I had to file bankruptcy. Then to put the icing on my cake; I began noticing swelling in my left mandible where my Ameloblastoma had been removed. The Monday before Christmas it began aching and was starting to become unbareable. I called my mom(who's my rock) and told her. She told me to begin calling area dentists to see if anyone could get me in to get a pano. I called probably 7 places and NO ONE would help me at all. They wanted to wait till mid Jan or they wouldn't take me at all because again I have NO INSURANCE. Not even the free health clinic could get me in till late Januray. I knew this pain ment it was back but I needed it confirmed. I called my mom in tears and she started to cry(she never cries I knew she was terrified), she told me a guy she works with is very good friends with a dentist and she would see if he could help. He did and his friend Dr. Greg Busing DDS told me to get there right away and they would help me. He didn't waste time with examines because he knew all I need was an xray. He took my xray and he sunk, his body language told me my self diagnosis was correct. It was back, however, when I saw the xray I realized it was back with a vengence. It was much bigger than the last time and in 3 different locations!! I lost it and cried. I was refered back to my previous oral surgeon who took me in for a consultation and realized himself its back with a vengence. He works for a private pratice and they do not do work on persons that do not have insurance but he did refer me to the man that taught him everything he knows a the IU School of Dentistry for Oral Surgery. I went there today. I was told that this time I would have a resection because obviously the curettage hadn't worked as planned. They told me that tomorrow I have to get a CT and then they will call by Friday with the surgery date. They began talking about what would happend(I already knew), that the first surgery would be to remove all the infected bone and the tumor then replaced with a titanium plate and then the (very cute) doctor mentioned a illiac crest graft. I told him I ABSOLUTELY refused to ever have that ever again and I think he realized my conviction and mentioned BMP 2 protien. Its not approved by the FDA yet and is still in clinical trials but it has had amazing results. He said they use it at that hospital and I would be a canidate.

So here I am NINE years after my first surgery to remove my Ameloblastoma and I have to go through it again. I will end up losing over half my jaw and a large chunk of lower teeth. I do not have insurance, I am NOT looking forward to getting bills from them( I have NO clue how much this is going to cost me). I am terrified they will not be able to fix my face and I will look awful for the rest of my life. I am single and haven't had a date in years, this may make things a lot harder( I know its really stupid at a time like this but I am scared that I will look like a monster and NO ONE will ever love me). I am scared because I will never have lower teeth, with no insurance I will never be able to afford implant teeth or dentures. I am terrified of complications and that I could die. I really don't have anyone to talk to that understands, my mom is supportive but my friends don't know. They try to be supportive but I know that they have their lives, husbands and children to worry about before me.